Absolutely horrendous situation; pity party here.

[idontknowhowtomanageitall]

I’ll be honest, I’m just feeling really alone and very sorry for myself tonight

In June, DH was diagnosed with stage IV cancer after months of steadily increasing pain. We have a three year old (then two) and a five year old. It’s fair to say I’d always been the ‘default’ parent like a lot of mums I suppose but as DHs pain levels increased I found I was doing more and more.

I am now a carer to DH as well as managing the (very extensive!) needs of two young children and I am absolutely exhausted and burnt out. I have lost my temper twice with the children today because they are so full on. I feel like all day they have just been shouting at me - instant mummy, mummy, mummy. Three year old has started a ‘game’ where she wants me to be her and she is me - this game involves saying ‘mummy you Sophie’ (name changed for privacy although I’m probably very identifiable anyway!) and I reply yes mummy I’m Sophie. That went on for two hours this morning and I was nearly sobbing by the end of it. In between that my five year old has a constant constant CONSTANT barrage of questions ‘who is that? Why is he there? Why’s his coat black? Why’s he got a dog? What’s the dogs name?’ Yes, I can and regularly do ask him to knock it off (obviously in slightly more eloquent language!) but he generally stops for all of thirty seconds and then starts again.

At home I’m on a neverending cycle of putting things away, cooking, keeping on top of the laundry, breaking up squabbles, putting dishes away, getting DH drinks and lunch, getting the children food and drinks, it’s relentless. The children just won’t leave DH alone, he’s in a lot of pain, so it’s generally easier to be out of the house with them but then they get no downtime and I’m aware this affects behaviour.

I know they are suffering too as is DH And I want to be so compassionate and understanding and I am deep down but it’s sometimes buried under this layer of exhaustion and irritation. They are constantly trying to climb on me, lean on me, grab hold of me; I find it so suffocating, especially combined with the endless questions and silliness. The simplest of requests are ignored, like please don’t throw cushions off the sofa onto the floor. I know it takes seconds to pick them up but it feels like they are just trying to be difficult which I know isn’t the case.

I am barely holding it together some days and this is one of them.

I know it was a long time ago now when my late DM was ill with pancreatic cancer, but the Marie Curie nursing team were brilliant at coming in and taking over so that my dad could get a breather, go out for a walk or get some sleep. Just having someone else come in and take the caring burden off you for a while will help. Apologies if this has already been suggested.

Your DC are so young to be having to go through this, and my heart really goes out to you all in this difficult time.

This might be draconian but could you lock a door to contain them in a room or maybe the garden to stop them running back to DH while he's working and play with them there?

What an awful situation for you. I never wanted children but my heart wishes I could take them off you for a couple of hours just to give you some time to recharge. To take them for a nature walk, go to the park, do some craft or even make some pancakes (my oven is broken so no cakes sorry).

Yes, I mean some families are 3-4 kids, after all.

As much as I realise it is kindly meant I do feel large parts of the thread have fixated a bit on how if I can get someone to take the children off me for a while all will be well. And that clearly is not the case, so I genuinely don’t know why it’s become a bit of a focal point. In any case, I do have a ‘break’ again this week with school and preschool starting back but it’s also more to do.

I am being given a lot of admin tasks to do on this thread and honestly while I recognise the kind intentions I would respectfully ask people to bear in mind this is very overwhelming and a lot of it is already done, such as PIP and the palliative care team. I can’t demand anything anyway; I’m not the patient.

Sounds to me like you are doing an incredible job. The kids won’t be harmed by you snapping at them when at breaking point. What a horrendous time you are living through. So sorry.

I just wanted to pop on and say I hope this week is a bit easier with the kids back at school/pre school. Half term is always hard and for you it's just off the charts difficult. I feel for you.
The only suggestion I could think of was whether the little one could do pre school 5 days a week? Even just for a bit to give you a bit of headspace? I cannot imagine how hard this must all be for you. Hugs

Really sorry OP, it is a nightmare time for you. The only comfort I can think of is that it won't go on forever. The time will come sadly when your DH is no longer at home and the children will gradually get older and more rational.
About the constant state of irritation you live in, there are techniques to help deal with it. One is to recognise that you are stressed and exhausted, and to focus on your own situation with compassion, rather on the children's exasperating behaviour which is normal at their ages.

I apologise if this has already been suggested, but there's an MN thread dedicated to those whose OH has cancer that you might find useful. They are splendid people, full of compassion, humour and fortitude.

https://www.mumsnet.com/talk/life_limiting_illness/5521011-storm-part-4-for-partners-of-people-with-cancer

Sending sympathy - you're right that there's no straightforward answer.

Just wanted to say that hospice care is not just for end of life, and if he's stage 4 and in pain and you're struggling then you should absolutely consider getting in touch with them/asking for a referral. Some hospices have helplines you can call directly.

They might be able to admit him for a few days just to get his pain better controlled or they might be able to offer some family support for you and your children. So sorry you're having to deal with this.

Thanks. I think this is the problem and I get very triggered by ordinary child behaviour. This half term was only a week but it is still so draining having them both 24/7, and it does make me worry about the future a lot.

@Sturmundcalm that really is something which needs to come from him

That sounds really shit op. I'm sorry.

Small children are relentless enough without everything you're dealing with on top that. I'm in awe that you've managed to hold it together this long. You're stronger than you know and I wonderful Mum. I regularly lost my shit when my children were that age, and my husband wasn't terminally ill - I remember the questions stage so well, it drives you batty!

I'm not going to make any suggestions because I haven't been in your shoes and most of them are just causing more work for you in the short term. It's like when you're burnt out at work so they and put on lunchtime yoga and send you a course, it's just another thing you need to do and you've lost your lunch break!

Send love and strength.

Op, have you beeb given any charity flyers regarding support for carers? they all should be able to provide you with emotional support and signposting

Maggies https://www.maggies.org/support-and-information/supporting-someone-with-cancer/caring-and-supporting-someone-with-cancer/ they might be able to signpost where to get practical help hosework, meals so then that is one less thing for you to do

Ruth Strauss Foundation have peer support group for parents with young children who have a spouse with terminal cancer https://ruthstraussfoundation.com/info-and-support/support/

just incase you were bot given MacMillan’s details https://www.macmillan.org.uk/cancer-information-and-support/supporting-someone/practical-support-for-carers

I know all this feels like one more thing to do on your list, but people that do this day in day out might be able to give you 1% more headspace, and a space to vent with practical support. Thinking of you OP

Hi OP, sending huge amounts of sympathy and please try not to beat yourself up when you lose it with your children. They don’t understand what’s going on and you’re living through a horrendous time. The only thing I can offer is that you will get through this, take a day at a time or even an hour at a time. Made it to 9am? Yes! Managed not to tell the 3 year old to F-off? Yes! You are being the best parent/wife you can. Big hugs x

My God OP, just read through your posts and my heart breaks for you (all of you). I'm so sorry that you're going through this as a family. I honestly wish I there was something I could do to help, or some sort of magic wand to wave.

As a nurse, I do signpost and encourage patients/their NOK to call in the troops/get whatever help they can (often NOK feel like they have to shoulder everything, and there's almost a taboo in their minds about saying they need help/support), but I know real life isn't as simple as that. And as a single mum of two (though much older now) DC, I remember how bloody hard it was when the DC were tiny ---> the incessant questions, the non stop being on the go...and how trying to arrange stuff/getting help for the kids often meant more mental load/logistical planning for the parent!! You're running a gauntlet and feel like you're never ever off duty....and that is without having to also care for a loved one with Stage IV cancer.

Hopefully now, with schools etc starting back, you can get a little bit of your routine back. I won't say "getting a break" - I know that isn't the case. I can't say, "do x, y and z" - easy for me from behind a keyboard. I can say that if/when the nurses are back in contact with you, it is ok to tell them what you've told us: I look after my patients, but I like to support their NOK and families as much as I can too (even if just giving a listening ear). And post here to vent. We're here and we're listening. xxx

OP, I get it. My husband's cancer was much much less serious than the situation you're in but honestly the thing that shocked me was the amount of admin. Not that it wasn't reasonable, just that I hadn't anticipated how much bloody paperwork and organising things there would be, and DH couldn't cope with it. It was all juts massively draining in terms of mental load in addition to the practical and emotional stuff.

I don't have any answers because you sound like you've got your head screwed on and you've figured out what is and isn't possible, and who your village is. I was constantly surprised who were the people who said they wanted to help, versus those who actually did it. Do ruthlessly take up any offers of small help - meals, wrapping Christmas presents, whatever. But mainly just sending love and useless support, unless you happen to be in the SE in which case tell me three meals you'd like cooked and I'll drop them round.

@Sturmundcalm you have been coping amazingly with an unimaginable situation. But everyone has their limits. I’m going to suggest that you may need to prompt this conversation, about a few days respite care, to allow yourself a little relief to keep on coping.
It can be really difficult to put yourself first in this situation not only because you’re not use to it but maybe for fear of judgement too. But everyone would understand, definitely all the professionals involved would. Often it isn’t available immediately so it needs to be raised before it becomes an emergency.
Please be kind to yourself and start a conversation with your DH about some respite if you can.

No advice OP. Are you the poster whose DH is wedded to 'the chair' and cannot be moved from the sitting room? If so, I remember your earlier post. I'm assuming from everything that you've written that you don't have helpful/healthy/close by parents, as they would be the ideal ones to offer you some support - both practical and emotional - at this horrible time. I hope this week is a little easier now the DC will be back into their school and nursery routine and that you get a bit of time to yourself

Thanks very much @JassyRadlett . One of the problems with this stage of cancer is that it’s obviously spread so it kind of transcends many different departments. You’ve got the palliative care team, the lung team (primary lung cancer) orthopaedics (spread to bones) plus radiotherapy (only once but still a different department) chemotherapy … it’s a lot. It’s also a source of sadness that the cancer department is next to the maternity part so happy memories of having babies are now interchanged with this.

It honestly isn’t that people wont help, it’s just I have to make sure that the help I am asking for is actually going to be helpful. So for example last week a friend of mine stayed with the children while I took DH for chemo and that’s great. But really, honestly, asking people to drop everything just to give you a break (and given I’m not at work I probably get more breaks than many others) is a lot and like I say it also puts the burden of organising that and sorting it on me.

My worries are the here and now: the house is just so miserable, how can it not be, it’s affecting all of us, and also the future, when DH has gone.

@idontknowhowtomanageitall Ofcourse there are things people can do to help you! You are just too exhausted to be the project manager of that as well. Close family can come and stay at yours for one day to let you go out. They can have the kids over at theirs for sleepovers. Friends can take the children out to the park or other or come with you so you have someone to talk to. Dh relatives can come and spend some time with him so you can just focus on your children. Fill the freezer up and make easy meals. Sandwiches for lunch etc.

@cheezncrackers I’d just rather not get into who I am if you don’t mind. I was angry then. Not at DH but at the situation. At that point I’d been doing everything solo for months and I felt resentful and bitter and burnt out. That’s largely gone. But that thread just endlessly went on about getting DH to move to the garden which wasn’t helpful! DH has deteriorated further since that point and is still welded to the same chair but it’s now upstairs, he can’t even get in bed, it’s absolutely horrendous what this has done to him. I feel very upset that I was angry as I wasn’t angry with DH so much as exhausted and worn down. I’m still exhausted and worn down but sad, low, teary.

Op I haven't read all the replies so apologies if I repeat anything!

I am so sorry you are in this situation - I absolutely understand about the lack of a village. I have not had the experience of caring for a partner BUT I have been a carer to one of my children who has high support needs (autistic) while trying to not lose y job (I did lose it in the end) - and look after anotoher child so I am just going to speak from that perspective.

IT's okay to find your children annoying and difficult - I hugely sympathise with the absolute burn out. At the lowest points, I remember going to bed and leaving both children on their own in front of screens in the middle of the day - this was absolutely not ideal/good/ healthy but I literally could not cope.

If you can afford ANY help - like a teenager to come and play or even do basic supervision while you go to bed and watch tv - do it.

I think there is such a lack of proper attitude to 'help' in our culture. You need it!

Perhaps you can't afford it but you definitely shouldn't feel ashamed if you want to get even a few hours.

Sorry just read your later post - again, so sorry and you should never feel guilty or bad for any feelings you had along the way - sending huge sympathies.